Research blow as funding faces axe

The research study into the cause of CdLS is threatened following a decision by the UK’s Medical Research Council (MRC) to end its financial support for the Newcastle University project.

It is believed that the MRC’s policy now is to increasingly focus attention on research funding for more common ailments and genetic.

The MRC has been the main sponsor of the project for the past five years and funded much of the lab work that has formed the nucleus of the research.

“Finding the gene has been a lot harder than we thought it would be,” said Professor Tom Strachan, who broke the news of the MRC’s decision to families at the Cheshire conference.

“We had hoped to have found it by now but we are following up a number of interesting leads. We are very very disappointed by the MRC’s decision and are now desperately seeking alternative funding so the research can continue.

“We believe we are very close”

The work has also been supported by the funding of one research assistant from Action Research. That funding is unaffected but is also due to terminate at the end of this year, and the prospects of renewed funding from this source are slim.

CdLS Foundation UK’s chairman Alan Peaford said: “This is very sad news. Of course we recognise that there are very few people affected by the syndrome, but for those few it is their whole world. By identifying the gene that causes CdLS we could have pre-natal diagnosis and doctors may be able to predict the severity of the condition when testing pregnancies.

“Newcastle has done a mountain of work searching for that elusive needle in the haystack and it would be a terrible tragedy if the work had to stop now we are so close to getting a result.”

Professor Strachan and the Foundation will be working together to identify potential sources of research funding.

“We have a good record of working together as a parent-support group and a genetics research team. We were able to prove that for the National Lotteries grant for the behaviour research and I hope we can do the same again for the gene research,” Alan said.

“This issue reinforces the need for awareness. The more people are aware of the condition the more they will respond to calls to help find the cause. We will look at whether there will be any benefit of starting a campaign to increase government awareness.”

Professor Strachan said that the Newcastle team are working “all hours” to see if they can identify a positive link between a defective gene and CdLS.

“The team is very grateful to those families who gave blood at the Chester conference,” said Newcastle researcher Emma Tonkin. “Any one of those samples could be vital in finding the gene that causes CdLS”.

Because of the high cost of DNA testing of all the samples, the Newcastle project costs in the region of £50,000 a year.